Patient Centred Medicine: Adherence and Concordance

Dr Rachel O’Hara Public Health, ScHARR r.ohara@sheffield.ac.uk

Phase 2a 21/11/16 1

Learning objectives

1. What is meant by patient compliance

2. Adherence and doctor-patient communication

3. The ‘patient-centred’ approach

4. Concordance and shared decision making

5. The NICE guidance on medicines adherence

6. Ethical considerations

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Patient compliance (1) “The extent to which the patients'

behaviour (in terms of taking medications, following diets or other lifestyle changes) coincides with medical or health advice”

Haynes et al (1979): Quoted in Ogden (2007)

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Patient compliance (2) • Older terminology • Paternalistic relationship - patient must follow the

doctors orders [passive patient]

• Professionally focused rather than patient focused

• Assumes that the ‘doctor knows best’

• It does not look at the problems patients have in managing their heath/illness

• Between 33% - 50% of medicines prescribed for long-term conditions not taken as recommended

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Patient adherence • Shift in approach from ‘compliance’ to ‘adherence’

• Acknowledges importance of patients beliefs

• Still regards the health professional as the expert conveying their knowledge

• Communication from the health professional results in enhanced patient knowledge, satisfaction and adherence to the recommended medical regime

• The term ‘adherence’ is still used but a more patient centred model is recommended to support adherence

• A lot of research addressing medicines but relevant to all health behaviour

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Non-compliance/adherence following organ transplants

• Non-adherence rates among transplant recipients range from 2% to 68%.

Chisholm (2002) Drugs. 62:567-575.

• 260 kidney transplant recipients

• 18% were found to be non-compliant with treatment

• 91% of these subsequently experienced either organ rejection or death

• Better patient selection, more education, and simplified medical regimens designed to reduce noncompliance

Rovelli et al (1989). Transplant Proc; 21: 833-4.

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• Based on research - patients with a variety of long-term conditions

• Key beliefs influencing patient evaluations of prescribed medicines can be grouped under two categories

Necessity beliefs - Perceptions of personal need for treatment

Concerns about a range of potential adverse consequences

• Validated questionnaire - Beliefs about Medicines

• Adherence - ↑ Necessity beliefs ; ↓ Concerns See Horne et al. (2013)

Necessity-Concerns Framework

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Beliefs about medicines questionnaire (BMQ) Horne et al. Psychology and Health, 1999, 14, 1-24

Specific Qs

1) My health at present depends on my asthma medicines

2) Having to take asthma medication worries me

3) My life would be impossible without my asthma medication

4) Without my asthma medication I would be very ill

5) I sometimes worry about the long term effects of my asthma medication

6) My asthma medication is mystery to me

7) My health in the future will depend on my asthma medication

8) My asthma medication disrupts my life

9) I sometimes worry about becoming too dependent on my asthma medication

10) My asthma medication protects me from becoming worse

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Beliefs about medicines questionnaire (BMQ) Horne et al. Psychology and Health, 1999, 14, 1-24

General Qs

11) Doctors use too many medicines

12) People who take medicines should stop their treatment for a while every now and again.

13) Most medicines are addictive.

14) Natural remedies are safer than medicines

15) Medicines do more harm than good.

16) All medicines are poisons

17) Doctors place too much trust on medicines

18) If doctors had more time with patients they would prescribe fewer medicines.

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What stops patients from taking their treatment? https://www.youtube.com/watch?v=lQGqD_9tyVM

Necessity-Concerns Framework – further reading • Horne et al. Understanding patients’ adherence-related beliefs about medicines

prescribed for long-term conditions: a meta-analytic review of the Necessity-Concerns Framework. PLoS ONE. 2013; 8(12): e80633. http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0080633

• Chater et al. Profiling patient attitudes to phosphate binding medication: a route to personalising treatment and adherence support. Psychol Health. 2014; 29(12): 1407-1420. http://www.tandfonline.com/doi/abs/10.1080/08870446.2014.942663

• Kendler et al. Influence of patient perceptions and preferences for osteoporosis medication on adherence behavior in the Denosumab Adherence Preference Satisfaction study. Menopause. 2014; 21(1): 25-32. http://journals.lww.com/menopausejournal/Abstract/2014/01000/Influence_of_patient_perceptions_and_preferences.6.aspx

• Chapman et al. Patients' perspectives on antiepileptic medication: relationships between beliefs about medicines and adherence among patients with epilepsy in UK primary care. Epilepsy & Behavior. 2014; 31: 312-320. http://www.sciencedirect.com/science/article/pii/S1525505013005490

• Arriola et al. Modifiable risk factors for adherence to adjuvant endocrine therapy among breast cancer patients. Patient education and counseling. 2014; 95(1): 98-103. http://www.sciencedirect.com/science/article/pii/S0738399114000056

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Patient-Centredness • Shift in focus from treatment to the process of care

• Central to Dept of Health policy from 1991 onwards

• Patient-centred care is a philosophy of care that encourages:

o Focus in the consultation on the patient as a whole person who has individual preferences situated in a social context

o Shared control of the consultation, decisions about interventions or management of health problems with the patient

Dept. of Health (2004) Patient and Public Involvement in Health: the Evidence for Policy Implementation 12

“…the use of active listening skills by professionals; encouraging patients to express their agendas; attempting to understand patients’ points of view and expectations; and working with patients in the management of their illness. Improving communication, meeting patients’ information needs and sharing decisions can be seen as components of patient centred care.”

NHS CRD (2000) Informing, communicating and sharing decisions with people who have cancer,

Effective Health care, 6, 1-8 13

Good Dr-Pt communication: Impacts

1. Better health outcomes.

2. Higher compliance to therapeutic regimens in patients.

3. Higher patient and clinician satisfaction.

4. Decrease in malpractice risk.

Theofilou (2011) Primary Health Care: Open Access

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Communication and Misunderstandings • Britten et al (2000) tape-recorded and interviewed 35

consultations between doctors and patients.

• Misunderstandings arose between doctors and GPs in 28 out of the 35 consultations.

• Tape recorded consultations between doctors and patients and interviewed patients AND doctors prior to the consultation and after the consultation.

• The following case illustrates the kind of misunderstanding that can arise.

Misunderstandings • Patient : Mrs X is a 67 year old retired cleaner. She has had rheumatoid

arthritis & has difficulty walking. She takes a range of drugs including painkillers and has gold injections at the hospital. She is also worried that she is losing her hair

• Doctor: Dr A is a female doctor in a single handed rural practice • The patient is uncertain about the cause of her hair loss and in the

consultation asks whether it is due to the drugs. The doctor replies with a question about steroid injections. Afterwards, the patient attributes the hair loss to her gold injections and decides to discontinue them

Pt: And there's another thing. I'm losing my hair. Erm is it the medication or is it erm arthritis or what? Could it be? I don't know ... Mm. I mean I know I've never had a good head of hair but ...

Dr: You've just had steroid injections haven't you. You haven't been taking steroids by mouth have you?

Pt: No

Dr: No. I doubt if it's the injections. Er ... how many have you had?

Pt: Erm I've had ... I've had four I think

Dr: Four altogether

Pt: Mm. Do you think it's them then?

Dr: It's ... it's possible but ... erm ... on the other hand it may be again just one of those things

Pt: Mm

Dr: ... that people do tend to get thinner hair as they get older

The Consultation

Post-consultation interview with researcher Pt: Well I did mention about losing my hair and she thought it was the injections that I've been having. So I won't be having any more of those

Ir: What were the injections? I don't think we talked about those

Pt: Well I used to have one every time I went to the hospital ... I think they're called gold injections

Ir: Is that for the arthritis?

Pt: Yes

Ir: So how often have you had that before?

Pt: I've had four altogether

Ir: And she thinks that's what's causing your hair to fall out?

Pt: She thinks that's what it is. She's not sure, but that's what she thinks.

Ir: Right. And were they helping at all the injections?

Pt: Cor, they're marvellous. They last a month and you don't get any pain at all

Ir: So it's a bit of a shame not to be able to have any more then?

Pt: Mmm ... I'm not having any more, I'd rather keep me hair!

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Concordance • Extension of principles of Patient Centred Medicine

• Rather than thinking about health care relationships as a means of enforcing the doctors instructions, we now think about patients more as equals in care

• It is expected that patients will take part in treatment decisions and have a say in the consultation

• Most work addresses prescribing/medication - the term adherence is still used

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“Concordance is based on the notion that the work of the prescriber and patient in the consultation is a negotiation between equals and the aim is therefore a therapeutic alliance between them. This alliance, may, in the end, include an agreement to differ. Its strength lies in a new assumption of respect for the patient’s agenda and the creation of openness in the relationship, so that both doctor and patient together can proceed on the basis of reality and not of misunderstanding, distrust and concealment.”

Working Party (1997)

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Skills: steps for sharing decision making with patients 1. Define the problem, taking in yours & patient’s views

2. Convey that professionals may not have a set opinion about the best treatment, even when patient priorities are taken into account

3. Outline the options and, if relevant, the consequences of no treatment

4. Provide information in preferred format

5. Check the patient’s understanding of the options Elwyn et al (2003)

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Skills: steps for sharing decision making with patients (cont.)

6. Explore the patient’s concerns & expectations about the condition, treatment options & outcomes

7. Check the patient accepts the decision sharing process

8. Involve the patient in the decision making process to the extent the patient wishes

9. Review the needs & preferences after the patient has had time for further consideration

10. Review treatment decisions over time Elwyn et al (2003)

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Barriers to concordance (1) Patients:

• Do patients necessarily want to engage in discussion with their doctor?

• Research indicated that in some cases it might serve to worry the patient more

• Patients may simply want the doctor to tell them what to do, where medical decisions were complex or based on complicated statistical risks

Lupton (2003)

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Barriers to concordance (2) Health professionals: • Relevant communication skills

• Time/resources/organisational constraints

• Challenging – patient choice V Evidence Pollock (2005)

Issue date: January 2009

Medicines adherence Involving patients in decisions about prescribed medicines and supporting adherence

NICE clinical guideline 76 25

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Background • Adherence is the extent to which the

patient’s actions match agreed recommendations

• Addressing non-adherence is not about getting patients to take more medicines

• Healthcare professionals need to consider perceptual and practical factors that influence the patient’s motivation and ability to adhere to agreed treatment

https://www.nice.org.uk/guidance/cg76 26

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Key Principles 1. Improve communication

2. Increase patient involvement

3. Understand the patient’s perspective

4. Provide information

5. Assess adherence

6. Review medicines

More detailed slides appended for self-study

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The duties of a doctor Communication, partnership and teamwork

• Work in partnership with patients.

− Listen to, and respond to, their concerns and preferences.

− Give patients the information they want or need in a way they can understand.

− Respect patients’ right to reach decisions with you about their treatment and care.

− Support patients in caring for themselves to improve and maintain their health.

• Work with colleagues in the ways that best serve patients’ interests.

28 Promoting excellence: standards for medical education and training,

GMC 2015

Ethical considerations • Mental Capacity - Mental Capacity Act (2005)

e.g. dementia, severe learning disability, brain injury, mental health condition

• Decision that may be detrimental to a patient's wellbeing

• Potential threat to the health of others (e.g. infections diseases)

• When the patient is a child: – 3rd party (parents)

– When can children take responsibility for their medication?

– Should more weight be given to the parents' wishes or the child's?

– What if the parent, child, and doctor all disagree? 29

Ethical considerations: public health threat The Public Health Act 2010 provides a legal basis to detain and isolate an infectious individual. It allows for persons who have category 4 or 5 infections diseases to be brought to a specified place for isolation if they pose a serious public health risk to others and if all other reasonable efforts to support treatment have failed. [Cat 4: ‘Bird flu’ , SARS, TB, Typhoid; Cat 5: AIDS, HIV infection] No powers to compel treatment - rarely used as very difficult to justify taking away an individual's liberty. Usually try to persuade voluntary compliance.

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Ethical considerations: child welfare

Under Section 1 of the Children Act 1989, the child's welfare shall be the Court's paramount consideration. Where a child is of sufficient understanding, medical treatment (including examination) may only be given with the child's consent.

It is for the Doctor to decide whether the child can give consent. Where the child is not of sufficient understanding a parent, or person with parental responsibility, may consent.

Children capable of providing consent cannot be examined if they refuse that consent.

If there is a dispute the matter should be put before a Court.

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Learning objectives

1. What is meant by patient compliance

2. Adherence and doctor-patient communication

3. The ‘patient-centred’ approach

4. Concordance and shared decision making

5. The NICE guidance on medicines adherence

6. Ethical considerations

32

Finally… Don Berwick - What Patient Centred Care Really Means

Author of review into patient safety in the NHS 33

Further reading • Elwyn G. Edwards A and Britten N. (2003) “Doing Prescribing”: How doctors

can be more effective. BMJ, 327, 864-867. • Lupton D (2003). Medicine as culture. 2nd edn. London: Sage. [Online access]

• Ogden J. (2007) Health Psychology: a textbook (4th ed) Maidenhead: Open University Press. Chapter 4. [Online access]

• Pollock, K (2005) Concordance in medical consultations: a critical review, Oxford: Radcliffe Publishing. [Online access]

• Horne R et al. (2005) Concordance, adherence and compliance in medicine taking. Report for the National Co-ordinating Centre for NHS Service Delivery and Organisation R & D (NCCSDO) http://www.nets.nihr.ac.uk/__data/assets/pdf_file/0007/81394/ES-08-1412-076.pdf

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Issue date: January 2009

Medicines adherence Involving patients in decisions about prescribed medicines and supporting adherence

NICE clinical guideline 76 35

35

Key Principles 1. Improve communication

2. Increase patient involvement

3. Understand the patient’s perspective

4. Provide information

5. Assess adherence

6. Review medicines

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• Adapt your consultation style to each patient’s needs

• Establish: - the best way to communicate with each patient and consider using communication aids

- the level of involvement the patient wants

• Ask open-ended questions

• Encourage patients to ask questions

1. Improve communication

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Increase patient involvement by:

• clearly explaining the condition and the pros and cons of treatment

• clarifying what the patient hopes the treatment will achieve

• talking and listening to the patient (note any non verbal cues) rather than making assumptions about patients’ preferences about treatment

2. Increase patient involvement (1)

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• Help patients make decisions based on likely benefits and risks rather than misconceptions

• Accept that patients:

– may have different views from healthcare professionals about risks, benefits and side effects

– have the right to decide not to take a medicine if they have the capacity to, and have the information to make an informed decision

• If the patient decides not to take a medicine and you think this could be harmful, record the decision and the information you provided on risks and benefits

2. Increase patient involvement (2)

• Patients sometimes make decisions about medicines based on their understanding of their condition and possible treatments, their view of their need for the medicine and their concerns.

• You can improve your understanding by asking patients: - What they know, believe and understand about their medicines and their need for a particular treatment

- About any general or specific concerns whenever you prescribe, dispense or review medicines

3. Understand the patient’s perspective

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• Before prescribing, offer patients (including inpatients) clear relevant information on their condition and the possible treatments

• Discuss information rather than just presenting it

• Check patients have any information they wish when medicines are dispensed

• Do not assume that Patient Information Leaflets will meet each patient’s needs

• Offer individualised information that is easy to understand and free from jargon

4. Provide information

• Routinely assess adherence in a non-judgemental way whenever you prescribe, dispense and review medicines

• Make it easier for patients to report non-adherence

• Consider using records to identify potential non-adherence and patients needing support

5. Assess adherence

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• At agreed intervals, review patients’ knowledge, understanding and concerns about medicines and whether they think they still need the medicine

• Offer repeat information and review, especially when treating long-term conditions with multiple medicines

• Ask about adherence when reviewing medicines

6. Review medicines

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